Unseen sufferers take self-help route

This story is part of a package on “Disability in Japan”. The introduction is here.

Staff writer In a small office building in the suburbs of Saitama City north of Tokyo, Tsutomu Kushima, 43, and his three colleagues run a small publisher named Mikumosha. They publish “CC Japan,” a biweekly magazine whose core readers are a certain small and very specific group.

That group is made up of people afflicted by inflammatory bowel disease (IBD), which mainly comprises people with Crohn’s disease and ulcerative colitis, two chronic inflammatory diseases of the intestines that impact the digestive system. Most IBD patients are first afflicted in their teens and 20s, but the cause is unknown and as yet there is no cure.

In Japan, both Crohn’s disease and ulcerative colitis are among the 121 “intractable diseases” designated by the government as rendering sufferers eligible for consideration for forms of assistance. Today, some 20,000 and 70,000 Japanese are diagnosed as sufferers, respectively — including Kushima and his colleagues.

Kushima was just 23 years old when he was diagnosed with Crohn’s disease after undergoing surgery for an intestinal blockage. As a teenager, he had often sought treatment for abdominal pain, but because the disease was not widely recognized at the time, clinicians failed to identify it from his symptoms.

Even after his surgery, however, Kushima’s life continued to be blighted by the disease. But, for fear of not being hired, he kept his disability secret when he was job-hunting, and then landed positions as a computer programmer in a series of companies while continually suffering abdominal pain, diarrhea and weight loss. However, in order to focus on his treatment, he once had to quit one of his jobs.

“It’s hard to work when you are suffering from an enormous pain,” he said. “There are moments where you need to break wind, but it’s so embarrassing that you try not to. And then it actually affects your intestines, and in the end it increases the pain.”

In order to control the inflammation causing their bowel disease, IBD sufferers must adhere to a strict range of foods. In some cases, they even have to receive nutrition in liquid form through a tube passing in through the nose.

In addition, they may need to see their doctors frequently, and so end up using their paid holidays if they are in regular employment. Overall, this typically makes for a tough and unstable working life for IBD patients.

Employment issues were in fact among the most discussed topics on a mailing list for people with IBD that Kushima was part of in the late 1990s. And that was when he hit on an idea.

“I realized that if we launched a company with people suffering from the same disease, we would understand our situation and wouldn’t have to deal with our concerns at the workplace,” Kushima said. So, through the mailing-list network he gathered coworkers and supporters and established his business in December 2000. Even now, Kushima is proud to say, it is rare that patients of the same disease launch a business.

Since the first issue, a prime focus of the magazine has been to compile a variety of information to improve the quality of life of IBD patients, covering such areas as family issues, tips on traveling and on how to improve time spent in hospital. Currently, the 680 yen magazine has a circulation of about 20,000 copies.

In addition, Kushima’s Mikumosha company is also engaged in other business activities, including sending out questionnaires to IBD patients on behalf of pharmaceutical companies to improve their products. “Our strength is the fact that we are [IBD] patients, and we know others who suffer. There are things we can do because we are patients,” said Kushima, adding that Mikumosha’s sales amount to some 50 million yen a year.

By the nature of his business, though, Kushima is forced to think about the disease all the time — and that can be difficult.

“I haven’t accepted my disease 100 percent. It’s not part of my identity yet. I mean, you don’t want to admit that you are an ‘intractable disease’ patient,” he said.

But he believes that having a disability shouldn’t stop people from working. “People with disabilities who can work should work and pay tax and get the money flowing. We shouldn’t rely on the government [for support], but create our own welfare,” Kushima said.

Practicing what he preaches, he said that Mikumosha plans to publish books that cater to other intractable disease patients.